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It's not nonsense at all. I'm a personal trainer, 50 yrs old, and have been

ill since 1989. I was disabled for many years and fought my way back to the

level I am at now. I am still ill, and take a lot of meds, including provigil

which promotes wakefulness. Without all the meds and supplements I take, I

would have no immune system. I even had melanoma several years ago. I have

posted on here many times in the past. I know it's difficult to imagine, but

with

the right treatments, you can fight your way back, and exercise at your

threshold. I've been in business now for 11 years and formerly was a hospital

dietitian, which I can no longer do because of the CFIDS/FM. I specialize in

clients with medical problems, just like me.

Carol in LI, NY

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On 10/26/06, pjeanneus <pj7@...> wrote:

>

> Bob, she had a lot of spirit and toughed it out.

The hallmark symptom of ME is that is gets worse - much worse, in a

big hurry - with exertion. There is absolutely no way Akers had that.

Maybe through some incredibly loose reading of the crap CDC

guidleines, she had CFS, but I just don't see how - how do you have

fatigue that reduces your activities by 50% and still be a pro soccer

player? It just does not seem possible.

- Bob N.

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> On 10/26/06, pjeanneus <pj7@...> wrote:

> > Bob, she had a lot of spirit and toughed it out.

>

>

> The hallmark symptom of ME is that is gets worse - much worse, in a

> big hurry - with exertion. There is absolutely no way Akers had

that.

> Maybe through some incredibly loose reading of the crap CDC

> guidleines, she had CFS, but I just don't see how - how do you have

> fatigue that reduces your activities by 50% and still be a pro soccer

> player? It just does not seem possible.

>

> - Bob N.

We had champion swimmers, marathon runners, a tennis pro, and a hang

glider instructor who ran wind sprints all day while holding on to

students flying wires - and there was absolutely NO " toughing it out " .

Completely impossible. Out of the question. This is a physical

incapacity that absolutely did not allow for mental compensation when

the body was unwilling to respond.

No amount of spirit enabled us to walk to the bathroom when we were

forced to crawl.

But... in light of Dr Bell's IV infusion results, perhaps there is a

reason why was able to keep on going.

Or perhaps she was still in the " slowly going downhill " stage that

Gerald (Jerry) Kennedy was in during the few months that he had before

succumbing to the same degree as Janice.

If Dr is satisfied that has CFS, that's good enough

for me.

-

Station: Cable News Network (CNN)

Date: Oktober 24, 1999

Programme: CNN & Time

URL: http://cnn.com/TRANSCRIPTS/impc.html

(home page)

http://cnn.com/CNNPromos/cnntime

(home page 2)

http://cnn.com/TRANSCRIPTS/9910/24/impc.00.html (text)

SICK AND TIRED

--------------

ANNOUNCER: CNN & TIME. Tonight, " Sick and Tired. " It's been called the

yuppie

flu, but it's been anything but a passing fad. It is a major public

outcry.

We all have days when it feels like we just can't roll out of bed.

We're

tired, listless, completely drained. But imagine feeling that way and

worse

day in and day out for weeks, months, and even years.

JEFF GREENFIELD, HOST: We're talking about chronic fatigue syndrome,

the

mysterious, debilitating illness that first showed up in the mid-

1980s. And if

you thought that this yuppie flu was the invention of hypochondriacs

or had

gone the way of Duran Duran or somehow had been cured, consider this.

In the

United States alone right now, hundreds of thousands of people may be

struggling with CFS.

Here's Daryn Kagan.

(BEGIN VIDEOTAPE)

DARYN KAGAN, CNN CORRESPONDENT (voice-over): As the 1999 Women's World

Cup

came down to the wire in penalty kicks, another drama was taking place

behind

the scenes.

MICHELLE AKERS, U.S. WOMEN'S SOCCER TEAM: I'm graying out, and I can't

hear,

and my body's just clenched.

SPORTS ANNOUNCER: Look at Akers. She leads by example.

KAGAN: Akers played 90 minutes in blistering heat, until her

body

gave out.

SPORTS ANNOUNCER: All eyes are on Akers.

AKERS: So they put me on the table and then started trying to get the

IVs in.

KAGAN: Akers' doctors, coaches, and teammates know her symptoms are

real, but

some people think the disease she's recovering from, chronic fatigue

syndrome,

is not.

(on camera): When you say worst, what does worst feel like for people

who

don't know what that feels like?

AKERS: It's like just feeling totally empty on the inside. It's like --

there's no reserve, no energy. It's like a black hole in the very

depths of

your soul.

(voice-over): For years, CFS has been dismissed by many in the general

public,

the medical profession, even experts at the Federal Centers for Disease

Control and Prevention. Fifteen years ago, a mysterious illness swept

through

the Alpine resorts and towns near Lake Tahoe. Incline Village, Nevada,

was

ground zero.

DR. DAN PETERSON, PHYSICIAN: The first ones were isolated cases. A

marathon

runner in town who couldn't run any longer.

KAGAN: Dr. Dan is a local physician. He saw the first cases.

PETERSON: Then we started seeing the clustering with the girls' high

school

basketball team where the entire team became ill -- extremely ill.

KAGAN: At Tahoe-Truckee High School, dozens of students came down with

symptoms resembling mononucleosis. So did a third of the teachers.

JERRY KENNEDY: You're not tired. You're -- it's like the blood's

drained out

of you.

KAGAN: Like Jerry Kennedy who taught auto mechanics and drafting and

his wife

Janice (ph) who taught English.

JANICE KENNEDY, FORMER HIGH SCHOOL TEACHER: It's like having bricks

piled on

you. It's as though you're fighting to move at all.

JERRY KENNEDY: It's the worst feeling I've ever had in my life. I can't

compare it to anything else that's ever happened to me.

KAGAN: The number of cases multiplied during the summer of 1985.

PETERSON: That's when I first thought, well, there's some new

contagious

disease, you know, I mean, there's something in the water, some

Typhoid

had come into the school system and affected the kids and the teachers.

KAGAN: Besides fatigue, most patients developed a bizarre mental

fogginess.

JERRY KENNEDY: You feel dumb because you can't remember things. You

forget

people's -- you don't even comprehend the names. You lose it.

JANICE KENNEDY: As an English teacher, I remember one horrible moment

when I

asked myself, " What is a subordinate clause? " I could not remember

what a

subordinate clause was.

KAGAN: Eventually, more than 250 people living around Lake Tahoe

seemed to

have the illness. For months, Dr. couldn't persuade anyone to

investigate. Finally, the CDC agreed to send a two-man team.

JANICE KENNEDY: They didn't seem to feel that there was an epidemic,

and we

knew there was. It might have been small, but it definitely existed.

DR. WILLIAM REEVES, CDC EPIDEMIOLOGIST: CDC's study at that time

failed to

identify any evidence that there was an unusual occurrence of a

chronically

fatiguing illness.

KAGAN: Dr. Reeves is the CDC epidemiologist now in charge of

investigating chronic fatigue syndrome. He didn't go to Incline

Village, but

he defends the team that did. He also defends their findings, which

are still

controversial today. REEVES: Using epidemiologic public expertise of

the time,

there was no evidence, clear-cut, replicable evidence that anything

unusual is

happening in that population.

PETERSON: As I just said right now, I'm right about this. I know that

these

people were well, and now they're sick, and they're staying sick. So I

have to

hang in there and be diligent about it, regardless of what the rest of

rest of

the world thinks.

KAGAN: Over the years, chronic fatigue syndrome has been thought of as

a

trendy illness, the yuppie flu. Sufferers say the official name the

CDC gave

it didn't help.

JANICE KENNEDY: Ever since they started calling it chronic fatigue

syndrome, I

think every person who has had it, every family member of someone who

has it,

every doctor who is familiar with it hates that name because it seems

to

trivialize.

KAGAN: A diagnostic test for CFS has yet to be developed, but the CDC

did come

up with a definition: debilitating fatigue lasting at least six

months, along

with four of eight other symptoms. They include sore throat, muscle

and joint

pain, short-term memory loss, and an inability to recover from

exertion. New

cases have continued to crop up all over the country. Akers

first

noticed her symptoms in 1991.

AKERS: I would go into the shower after training and just cry and cry

and cry.

It was the only place I could go to where no one would see me and just

say, " I

can't do this. I can't do it. "

KAGAN: Akers sidelined herself for almost an entire season in order to

recover, but when she came back to soccer, she suffered constant

relapses.

Still, she kept the illness secret from her teammates, friends, even

her

family. Finally, in 1996, Akers went public. She wrote an emotional

letter to

Congress describing a day in the life of a typical sufferer.

AKERS: That was the first time I admitted publicly even to my folks

how bad I

was actually feeling, and I read it to my dad over the phone. I

remember my

dad was just stunned.

KAGAN: And so were some members of Congress who voted to give millions

of

dollars to the CDC to solve the mystery of chronic fatigue. But less

than half

actually went directly to CFS research. That led to another mystery.

What

happened to the money?

(on camera): This year, federal investigators found out. The CDC

diverted

between $9 and $13 million dollars, money that Congress had

specifically set

aside to study CFS. Instead, it was spent on other diseases, like

polio and

measles.

(voice-over): It was Dr. Reeves, the head of the government

CFS lab

who helped bring the diversion to light. He says he did so after a

superior

asked him to lie about how much money was going to CFS research.

REEVES: I felt that the best thing to do was just to report this to

Congress,

and that's when I formally blew the whistle.

KAGAN: But not before CDC officials gave inaccurate and misleading

information

to Congress about how the money was spent. But why was the money taken

from

CFS in the first place?

REEVES: It was taken from chronic fatigue syndrome because it was not

perceived by the people doing it as important as the other ones, not

perceived

as an infectious disease.

KAGAN: The CDC's current director, Dr. Koplan, says all the

missing

money will be restored over the next four years, and while nobody was

fired,

the division overseeing CFS has been put on probationary status.

DR. JEFFREY KOPLAN, CDC DIRECTOR: CDC, in regard to chronic fatigue

syndrome,

misspent funds allocated to us for chronic fatigue syndrome, and for

that, we

sincerely apologize to all parties involved and in particular the

people and

their families that suffer from chronic fatigue syndrome.

REEVES: We were set back. There is no question about that. We were set

back

substantially. Programs suffered because of this. This has probably

set us

back three to five years.

JERRY KENNEDY: I'm not surprised that the money went someplace else.

Somebody

had the power to move it some other place, some pet project they had,

and they

did it.

KAGAN: Perhaps the government's premier laboratory didn't make CFS a

priority,

but other researchers have. Dr. Dedra Buchwald, a Harvard-trained

physician,

arrived in Incline Village after the CDC left, and she's been studying

CFS

ever since. She believes she's on the verge of a breakthrough. She's

designed

a unique study using identical twins. She compares sick twins to their

healthy

counterparts, trying to detect differences caused by CFS.

DR. DEDRA BUCHWALD, CFS RESEARCHER: So they'll put the electrodes on

your

head, and then what they do is -- they'll monitor your brain waves.

KAGAN: (ph) and Martha (ph) are the 21st pair of

twins to

take part in Buchwald's study. Martha was an Arkansas state trooper

for 20

years, until a series of worsening symptoms forced her into early

retirement.

MARTHA WILLIAMS, FORMER ARKANSAS STATE TROOPER: I always had a reason

for why

I was hurting. It was either the leather gear or the bulletproof vest.

The

boots. Getting in and out of the car. The headaches was from my hat.

Or my

eyes hurt because the sun...

KAGAN: is a construction worker in Missouri. She's still on the

job.

MARY NELSON, CONSTRUCTION WORKER: Oh, yes. Yes. Anything they've got

that

comes in by delivery, if I'm -- I happen to be at the warehouse, I'm

unloading

it. KAGAN: Researchers aren't supposed to know which twin is sick, but

it's

pretty obvious. Martha's symptoms - fatigue, muscle pain, difficulty

thinking

and sleeping -- are familiar indicators of CFS.

WILLIAMS: Your legs hurt. It feels like you're walking on needles. In

the

night while you're trying to sleep, you wake up, and it's hard to

describe to

someone, but it's like your arms and your legs are asleep, or they're

numb but

they hurt.

(BEGIN VIDEO CLIP)

CFS RESEARCHER: Here we go. Just stare at that thing, and if you have

to

blink, blink all at once, get it over with.

(END VIDEO CLIP)

KAGAN: For an entire week, the twins were put through a battery of

tests,

tests to measure exercise tolerance, memory and thought processing,

sleep

disturbances, and blood hormone levels.

BUCHWALD: What we thought was that there would very substantial

differences

between the healthy twin and the sick twin.

KAGAN: But there wasn't. Both twins performed low on many of the tests.

Buchwald believes it's because both twins have a genetic

predisposition to

CFS.

BUCHWALD: Right now, our thinking is just that there is a group of

people that

are vulnerable or that are likely to be vulnerable to get CFS.

KAGAN: Buchwald's study presents a new option, that hereditary plays a

major

role in chronic fatigue.

BUCHWALD: Most people who have that predisposition will never get

chronic

fatigue syndrome, but for an unfortunate few, they will be exposed to

some

series of triggers or trigger, which could be anything from an

infectious

illness to an episode of depression or a motor- vehicle accident, that

will

trigger this chronic fatigue syndrome.

KAGAN: Meanwhile, the Centers for Disease Control is still trying to

catch up.

KOPLAN: We're looking at what we have now, what resources we have in

terms of

people and laboratory techniques, what studies need to be done, who

else we

need to involve from outside in giving us more information. So we're

trying to

set a forward course in saying how can we make a difference with this

disease.

KAGAN: They're starting with a new national head count. As recently as

two

years ago, the CDC believed only 10,000 Americans had the illness. Now

the CDC

says, based on a study in Wichita, Kansas, that number is actually 40

times

higher. Today, the CDC estimates 400,000 Americans over age 18 have

active

CFS.

REEVES: This is a major public health problem, and as I said, in

Wichita at

least, this is about a quarter the number of people that have -- women

that

have breast cancer, and it's about four times more than the number of

women

that have cervical cancer.

KAGAN: But 15 years after the outbreak of CFS in Incline Village,

Nevada, the

man who first identified the illness expected to be further along.

PETERSON: I mean, the CDC is still counting heads, still saying this

disease

exists, and here are the numbers. Well, we -- I never expected to be

here

still quandering (ph) this problem 15 years later. I really didn't.

KAGAN: Recently, did his own follow-up of 180 of his original

patients.

PETERSON: About 30 percent of them are still severely disabled. The

remainder

have had substantial or at least partial improvements.

KAGAN: And how many are completely recovered?

PETERSON: None.

(END VIDEOTAPE)

GREENFIELD: In April, the Social Security administration official

recognized

chronic fatigue syndrome as a medical impairment. That makes it much

easier

for CFS patients to receive disability payments.

--------

© 1999 Cable News Network

---------------------------------------------

Co-Cure is not a discussion list. Please do not reply to the list.

Co-Cure Archives: http://listserv.nodak.edu/archives/co-cure.html

Co-Cure Website: http://www.co-cure.org

---------------------------------------------

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Bob, I assume you were responding to my recent email regarding juicing

when I mentioned . I don't know if she has/had CFS, liver

disease, adrenal disfunction, etc. I was simply pointing out that

someone who had the Canadian definition of 'CFS' used juicing to

help improve. It was on her website which I think she discontinued.

Mike C

- In , > Bob N. wrote:

> >

> > When will people stop talking about Akers? How could any

> > body think that she had CFIDS and could still be a profesional

> > athlete? what nonsense.

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Yes,Juicing does worsen my blood sugar problems.But juicing is helping me to

nourish myself. So,I use it very carefully. I must say that I found great

benefits from juicing and than Mike for reminding it some months ago.There

were days I would die because of undernourishment due to digestive problems

if I did not make juicing.

I do it couple of times a week at this point,use mostly vegetables and add

little amounts of fruits only to make the taste better.

I use mostly

beets,parsley,green veggies and add only 1 apple or pear to make it

drinkable.

bw

nil

Re: Akers

> Bob, I assume you were responding to my recent email regarding juicing

> when I mentioned . I don't know if she has/had CFS, liver

> disease, adrenal disfunction, etc. I was simply pointing out that

> someone who had the Canadian definition of 'CFS' used juicing to

> help improve. It was on her website which I think she discontinued.

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Maybe we should change the subject line on this thread to 'Juicing'

so as not to upset anyone, plus, that's what it is about, not MA.

Also, was looking very well conditioned the last time I

saw her on HBO, so I don't think she should be the poster child for

'CFS' any more that Cher should be.

Mike C

>

> Yes,Juicing does worsen my blood sugar problems.But juicing is

helping me to

> nourish myself. So,I use it very carefully. I must say that I

found great

> benefits from juicing and than Mike for reminding it some months

ago.There

> were days I would die because of undernourishment due to digestive

problems

> if I did not make juicing.

> I do it couple of times a week at this point,use mostly vegetables

and add

> little amounts of fruits only to make the taste better.

> I use mostly

> beets,parsley,green veggies and add only 1 apple or pear to make

it

> drinkable.

> bw

> nil

> Re: Akers

>

>

> > Bob, I assume you were responding to my recent email regarding

juicing

> > when I mentioned . I don't know if she has/had CFS,

liver

> > disease, adrenal disfunction, etc. I was simply pointing out

that

> > someone who had the Canadian definition of 'CFS' used juicing to

> > help improve. It was on her website which I think she

discontinued.

>

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Additionally, there was a professional golfer by the name of Tim

Simpson (not Simpson) who was diagnosed w/ CFS about 11 years

ago. He had to quit the regular tour, but now that he has turned 50

he is playing on the Champions Tour which is for pros who are at

least 50 years old. So perhaps professional athletes are able to

1)not get as sick as the rest of us, 2)are able to improve to a

greater degree than the mean, or 3) something else like getting

access to better medical services.

Mike C.

In , " erikmoldwarrior "

<erikmoldwarrior@...> wrote:

> We had champion swimmers, marathon runners, a tennis pro, and a

hang

> glider instructor who ran wind sprints all day while holding on to

> students flying wires - and there was absolutely NO " toughing it

out " .

> Completely impossible. Out of the question. This is a physical

> incapacity that absolutely did not allow for mental compensation

when

> the body was unwilling to respond.

> No amount of spirit enabled us to walk to the bathroom when we

were

> forced to crawl.

> But... in light of Dr Bell's IV infusion results, perhaps there

is a

> reason why was able to keep on going.

> Or perhaps she was still in the " slowly going downhill " stage

that

> Gerald (Jerry) Kennedy was in during the few months that he had

before

> succumbing to the same degree as Janice.

> If Dr is satisfied that has CFS, that's good

enough

> for me.

> -

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Yep.

Adrienne

Re: Akers

On 10/26/06, pjeanneus <pj7@...> wrote:

>

> Bob, she had a lot of spirit and toughed it out.

The hallmark symptom of ME is that is gets worse - much worse, in a

big hurry - with exertion. There is absolutely no way Akers had that.

Maybe through some incredibly loose reading of the crap CDC

guidleines, she had CFS, but I just don't see how - how do you have

fatigue that reduces your activities by 50% and still be a pro soccer

player? It just does not seem possible.

- Bob N.

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

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Hum, might be interesting to find out how she recovered, as she most

certainly was a very sick woman.

a Carnes

>

> Maybe we should change the subject line on this thread to 'Juicing'

> so as not to upset anyone, plus, that's what it is about, not MA.

> Also, was looking very well conditioned the last time I

> saw her on HBO, so I don't think she should be the poster child for

> 'CFS' any more that Cher should be.

>

> Mike C

>

>

>

>

> >

> > Yes,Juicing does worsen my blood sugar problems.But juicing is

> helping me to

> > nourish myself. So,I use it very carefully. I must say that I

> found great

> > benefits from juicing and than Mike for reminding it some months

> ago.There

> > were days I would die because of undernourishment due to

digestive

> problems

> > if I did not make juicing.

> > I do it couple of times a week at this point,use mostly

vegetables

> and add

> > little amounts of fruits only to make the taste better.

> > I use mostly

> > beets,parsley,green veggies and add only 1 apple or pear to make

> it

> > drinkable.

> > bw

> > nil

> > Re: Akers

> >

> >

> > > Bob, I assume you were responding to my recent email regarding

> juicing

> > > when I mentioned . I don't know if she has/had CFS,

> liver

> > > disease, adrenal disfunction, etc. I was simply pointing out

> that

> > > someone who had the Canadian definition of 'CFS' used juicing to

> > > help improve. It was on her website which I think she

> discontinued.

> >

>

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Hi everybody,

I had CFS for 13 years, which means that I then started to get tired

( around age 16), other symptoms where there since longer (childhood).

I've been very ill, during a period of 3 years I slept for more then

19 hours a day, sometimes not even able to move... the other years I

was 5-6 months 'ok' and then I had a fall back... which means I

couldn't do much anymore, not even read... and I don't know how or

why... but I'm cured since more then a year!

I don't take any medication anymore (only some glucosomyne for my

joint degeneration's), I sleep normal, eat normal and have plenty of

energy. I continue my studies computer-science/maths know because I

even regained my abstract thinking and memory...

I'm not a top athlete... I never did any serious kind of sport... I'm

a " typical " science and study girl (imagine a romantic-punk-geek).

I don't know anybody else in person who's been cured and regained

their strength...

I have some theory why I got cured... but since nobody knows what

goes wrong or why I got better, I can't prove anything... but being a

science person I'm trying everything I can to understand this...

maybe my theory is wrong and just a stupid idea to help myself not

feeling guilty. I'm so happy that I finally can start living my life,

but I know to-many people who are still fighting every day like I

did... and I can't even tell them how I did it or help them in

anyway... maybe only this: it's possible!!!! Don't believe any doctor

or person who tells you something else!!!

I'm not a superwoman, so if it can happen to me, it can happen to

everybody!

And also... I know that a lot of people claim to have CFS, while they

are just a bit tired or depressed (not that this isn't a bad thing)

but those people can cure more easily... I wasn't like that, I've

been to several hospitals and was officially diagnosed as CFS

patient, several times. They said I was a hopeless case and that I

could forget my dreams of being able to study a phd and probably

would end up as a plant in a wheel chair... THEY WHERE WRONG!

I'm just started my research know, before I didn't have the strength

or ability for that, so if anybody could help me with providing me

information about latest research or theories... mine has something

to do with the hypophysis and some horrible balance which pulls you

back every-time.

I hope this can give you some courage... and please feel free to ask

any question,

On 28/10/2006, at 9:24 AM, yakcamp22 wrote:

> Additionally, there was a professional golfer by the name of Tim

> Simpson (not Simpson) who was diagnosed w/ CFS about 11 years

> ago. He had to quit the regular tour, but now that he has turned 50

> he is playing on the Champions Tour which is for pros who are at

> least 50 years old. So perhaps professional athletes are able to

> 1)not get as sick as the rest of us, 2)are able to improve to a

> greater degree than the mean, or 3) something else like getting

> access to better medical services.

>

> Mike C.

>

> In , " erikmoldwarrior "

> <erikmoldwarrior@...> wrote:

> > We had champion swimmers, marathon runners, a tennis pro, and a

> hang

> > glider instructor who ran wind sprints all day while holding on to

> > students flying wires - and there was absolutely NO " toughing it

> out " .

> > Completely impossible. Out of the question. This is a physical

> > incapacity that absolutely did not allow for mental compensation

> when

> > the body was unwilling to respond.

> > No amount of spirit enabled us to walk to the bathroom when we

> were

> > forced to crawl.

> > But... in light of Dr Bell's IV infusion results, perhaps there

> is a

> > reason why was able to keep on going.

> > Or perhaps she was still in the " slowly going downhill " stage

> that

> > Gerald (Jerry) Kennedy was in during the few months that he had

> before

> > succumbing to the same degree as Janice.

> > If Dr is satisfied that has CFS, that's good

> enough

> > for me.

> > -

>

>

>

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a-MA has responded to me via email when I asked her a question,

even when she was more famous. If we could find her email address,

your suggestion below would be a good idea, IMO.

Mike C

>

> Hum, might be interesting to find out how she recovered, as she most

> certainly was a very sick woman.

>

> a Carnes

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, ainda <ainda1377@...> wrote:

> I have some theory why I got cured... but since nobody knows what

> goes wrong or why I got better, I can't prove anything... but being

a science person I'm trying everything I can to understand this...

>

Sir Osler said " Listen to the patient, he will give you his

diagnosis " .

It's uncanny how people sometimes go straight to the heart of the

matter, even if the reasons are unclear and don't seem to make sense.

What do you think happened?

-

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What a great story! I think more people than we know get well. There's 's

story on the CFS Phoenix website - sick for 2 decades and well now. Studies

have shown that if you're going to get well that its probably going to happen in

the first two years but that most people do get better over time.

It would be great to have your story on the CFS Phoenix website -

inspirational to many who have experienced terrible times.

http://phoenix-cfs.org/The%20SITE/StoriesCFS.htm

I'd also like know what exactly you did - if you did anything at all - that

helped you get well.

Yours truly, Cort

ainda <ainda1377@...> wrote:

Hi everybody,

I had CFS for 13 years, which means that I then started to get tired

( around age 16), other symptoms where there since longer (childhood).

I've been very ill, during a period of 3 years I slept for more then

19 hours a day, sometimes not even able to move... the other years I

was 5-6 months 'ok' and then I had a fall back... which means I

couldn't do much anymore, not even read... and I don't know how or

why... but I'm cured since more then a year!

I don't take any medication anymore (only some glucosomyne for my

joint degeneration's), I sleep normal, eat normal and have plenty of

energy. I continue my studies computer-science/maths know because I

even regained my abstract thinking and memory...

I'm not a top athlete... I never did any serious kind of sport... I'm

a " typical " science and study girl (imagine a romantic-punk-geek).

I don't know anybody else in person who's been cured and regained

their strength...

I have some theory why I got cured... but since nobody knows what

goes wrong or why I got better, I can't prove anything... but being a

science person I'm trying everything I can to understand this...

maybe my theory is wrong and just a stupid idea to help myself not

feeling guilty. I'm so happy that I finally can start living my life,

but I know to-many people who are still fighting every day like I

did... and I can't even tell them how I did it or help them in

anyway... maybe only this: it's possible!!!! Don't believe any doctor

or person who tells you something else!!!

I'm not a superwoman, so if it can happen to me, it can happen to

everybody!

And also... I know that a lot of people claim to have CFS, while they

are just a bit tired or depressed (not that this isn't a bad thing)

but those people can cure more easily... I wasn't like that, I've

been to several hospitals and was officially diagnosed as CFS

patient, several times. They said I was a hopeless case and that I

could forget my dreams of being able to study a phd and probably

would end up as a plant in a wheel chair... THEY WHERE WRONG!

I'm just started my research know, before I didn't have the strength

or ability for that, so if anybody could help me with providing me

information about latest research or theories... mine has something

to do with the hypophysis and some horrible balance which pulls you

back every-time.

I hope this can give you some courage... and please feel free to ask

any question,

On 28/10/2006, at 9:24 AM, yakcamp22 wrote:

> Additionally, there was a professional golfer by the name of Tim

> Simpson (not Simpson) who was diagnosed w/ CFS about 11 years

> ago. He had to quit the regular tour, but now that he has turned 50

> he is playing on the Champions Tour which is for pros who are at

> least 50 years old. So perhaps professional athletes are able to

> 1)not get as sick as the rest of us, 2)are able to improve to a

> greater degree than the mean, or 3) something else like getting

> access to better medical services.

>

> Mike C.

>

> In , " erikmoldwarrior "

> <erikmoldwarrior@...> wrote:

> > We had champion swimmers, marathon runners, a tennis pro, and a

> hang

> > glider instructor who ran wind sprints all day while holding on to

> > students flying wires - and there was absolutely NO " toughing it

> out " .

> > Completely impossible. Out of the question. This is a physical

> > incapacity that absolutely did not allow for mental compensation

> when

> > the body was unwilling to respond.

> > No amount of spirit enabled us to walk to the bathroom when we

> were

> > forced to crawl.

> > But... in light of Dr Bell's IV infusion results, perhaps there

> is a

> > reason why was able to keep on going.

> > Or perhaps she was still in the " slowly going downhill " stage

> that

> > Gerald (Jerry) Kennedy was in during the few months that he had

> before

> > succumbing to the same degree as Janice.

> > If Dr is satisfied that has CFS, that's good

> enough

> > for me.

> > -

>

>

>

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I want to be clear that I did not write anything in this post. Please

be careful when you edit and repost things. I would never have said

any of these remarks about Akers except that she had a lot

of spirit and toughed it out, but I didn't even write that.

a Carnes

>

> Yep.

> Adrienne

> Re: Akers

>

>

> On 10/26/06, pjeanneus <pj7@...> wrote:

>

> >

> > Bob, she had a lot of spirit and toughed it out.

>

>

> The hallmark symptom of ME is that is gets worse - much worse, in

a

> big hurry - with exertion. There is absolutely no way Akers had

that.

>

> Maybe through some incredibly loose reading of the crap CDC

> guidleines, she had CFS, but I just don't see how - how do you

have

> fatigue that reduces your activities by 50% and still be a pro

soccer

> player? It just does not seem possible.

>

> - Bob N.

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My stepsister is very good friends with her. I will call and ask her

how is doing. Last I heard she had done a lot of alternative

things.

a CArnes

>

> a-MA has responded to me via email when I asked her a question,

> even when she was more famous. If we could find her email address,

> your suggestion below would be a good idea, IMO.

>

>

> Mike C

>

>

>

> >

> > Hum, might be interesting to find out how she recovered, as she

most

> > certainly was a very sick woman.

> >

> > a Carnes

>

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It gets worse on exertion without the right treatments, and when you work

outside of your threshold. As you get better your threshold increases. I've have

personally trained many people with CFS/FM, working within their threshold.

Please do not discourage low intensity exercise. It is so important, with

proper education/and or supervision. At the very least, go to the pool and do

water aerobics. It makes you feel so much better.

Carol in LI, NY

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I am exercising at home now, with the help of a p.t., for 1/2 hr, 2x/wk. (Need

to up it to 3x) I am doing stretching and toning, using weights and exercise

ball. Without the therapist present no way I would've bothered, because I was in

a funk, but I went ahead and boy, did it help. I sure felt better. And I love

the feeling of a little burn.

I have-or had- the classic symptoms of CFS/ME, including post-exertional

fatigue, and have been really sick since the early '80's.

One thing I avoid doing, tho it was easier last time I tried, is lying down flat

to work out. I get brain fog from that.

Adrienne

Re: Akers

It gets worse on exertion without the right treatments, and when you work

outside of your threshold. As you get better your threshold increases. I've

have

personally trained many people with CFS/FM, working within their threshold.

Please do not discourage low intensity exercise. It is so important, with

proper education/and or supervision. At the very least, go to the pool and do

water aerobics. It makes you feel so much better.

Carol in LI, NY

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Where in " low intensity exercise " does professinal soccer fit? I agre

that exercise within your limits is a good thing, though.

On 10/28/06, Cattttttt@... <Cattttttt@...> wrote:

> It gets worse on exertion without the right treatments, and when you work

> outside of your threshold. As you get better your threshold increases. I've

have

> personally trained many people with CFS/FM, working within their threshold.

> Please do not discourage low intensity exercise. It is so important, with

> proper education/and or supervision. At the very least, go to the pool and do

> water aerobics. It makes you feel so much better.

>

> Carol in LI, NY

>

>

>

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She had to retire because of it; couldn't practice much, felt terrible after

games - I think she had it - I think there is a broad continium of CFS severity

ranging from people who are tired all the time but can still function to people

who cant do anything at all.

bob niederman <bobn1955@...> wrote: On 10/26/06, pjeanneus

<pj7@...> wrote:

>

> Bob, she had a lot of spirit and toughed it out.

The hallmark symptom of ME is that is gets worse - much worse, in a

big hurry - with exertion. There is absolutely no way Akers had that.

Maybe through some incredibly loose reading of the crap CDC

guidleines, she had CFS, but I just don't see how - how do you have

fatigue that reduces your activities by 50% and still be a pro soccer

player? It just does not seem possible.

- Bob N.

---------------------------------

Cheap Talk? Check out Messenger's low PC-to-Phone call rates.

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>

> Yes,Juicing does worsen my blood sugar problems.But juicing is

helping me to

> nourish myself. So,I use it very carefully. I must say that I found

great

> benefits from juicing and than Mike for reminding it some months

ago.There

> were days I would die because of undernourishment due to digestive

problems

> if I did not make juicing.

> I do it couple of times a week at this point,use mostly vegetables

and add

> little amounts of fruits only to make the taste better.

> I use mostly

> beets,parsley,green veggies and add only 1 apple or pear to make it

> drinkable.

> bw

> nil

** I also have problems with fruit, can not tolerate much, and did try

juicing for awhile. But that was hard. I now use a supplement that

seems to have a similar effect to juicing, it is called 'Juice Plus'.

The product is sold MLM, but can also be purchased direct from their

website. The JP has most of the sugars removed, so it is just

concentrated juice in a capsule. It has been very helpful to me,

helping energy a small amount, helping me not feel hungry all the

time, activating my immune system (normalizing temp and I now get

fever response sometimes again), and also helping gain a little more

muscle. And a lot less effort than juicing. I do still juice

sometimes, but always take JP.

--Kurt

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Sorry-but it is almost impossible to be very sick for 6-9 months or

more w/

no exercise and look well conditioned. You must be a very rare

exception. The longer this DD goes on, the worse one must look

or at least feel. If one doesn't have exercise intolerance, then

it is probably not CFS. It is impossible to go 5 years without

exercise and be well conditioned. That being said, when I was at

my worst within the first year, I looked pretty good-but it didn't

last.

Mike C

>

> When I was still very sick, I also looked wll conditioned, and

hated hearing

> that!!

>

> Carol in LI, NY

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I agree with this post. I am another example. I used to be an aerobics

instructor, teaching 15 high intensity classes a week, and was a hospital

dietitian. I was disabled for years. I am now a personal trainer/nutritionist. I

could never work out at the same capacity that I did prior to being sick, but

after many years of being sick, I was able to work out again.

The thing we all hate most about this illness is that people deny that

we have it because there are things we can do. Instead of denying that

someone has it, we should instead ask them what they did to be able to get well

enough to resume these parts of their lives again.

Carol in NY

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Adrienne,

I am so glad to hear that you are exercising with a PT. I hope that if

you hits some bumps in the road you don't get discouraged and give up. Just

know when your body needs a rest and listen to your body. If your eyes start

to burn or your hands turn ice cold, or your throat hurts more than a tickle,

you are doing too much. I always get brain fog from working out, and I do it

for a living! If you rest afterwards, it will pass. When my nose gets a

little stuffy, I know it is also time to stop. When I first began exercising

again, I found ENADA to be useful

if I got fatigued and too much brain fog. Also, I take Jarrow reduced L

glutathione. Many people don't believe in taking it in capsule form, but I know

for sure that it works for me. I hope your insurance gives you enough sessions

to learn how to exercise safely so you can continue yourself afterwards.

Also, if you need a week off after a while, just take it, and then resume.

Carol in LI, NY

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